So it’s 04:52 ( it’s now 01:15 the night after ) and I have had another night that pain has made it impossible for me to sleep. I feel too hot and I’m so anxious. I think the anxiety has a lot to do with that continuous noise in my left ear which sounds like a heart beat yet it isn’t a beat sound, it’s like when you would hold a shell up to your ear when you went to the beach as a kid.
All the pain and ear sound while being awful, has gave me lots of time to think, so why not put this “It’s all about ME” questionnaire out to the community for a bit of fun as well as to help us get to know each other better.
So here it is the “It’s all about ME” questionnaire. I have put the questions in bold text so that you can see them easier, my answers are following the questions.
It’s completely up to you if you would like to get involved, I am not putting any pressure on you at all. If you do want to get involved all you need to do is head across to Friends with ME Facebook I have added the questions as a post, just copy the questions into your comment box and then put in your answers.
It’s all about ME
1 )What is your name? Alisha
2 )When was your ME diagnosed? Dec 2012
3 )Who do you live with ? My Hubby & Alfie ( Our Dog ) full time and Our Daughter comes home most weekends from Uni.
4 )Do you have kids ? Our Daughter Becks plus the Dog 🐶
5 )What is your marital status now & before ME ? Married it hasn’t changed
6 )What is your employment status now & before ME ? I was a Business Development Manager when I was diagnosed but I was unfairly managed out of my role due to my illness.
7 )What is the worst thing about ME ? It took me away, I don’t know who I am anymore. In addition the pain and falling asleep unexpectedly. I can put something on that I want to watch or get ready to read something and within minutes I can be in a deep sleep.
8 )How do you control your pain ? Im very lucky that I have a Dr who understands about ME and how to control the pain. The best advice he gave me was even if I wasn’t in severe pain but could feel it building, I should still take medication every 4 or 6 hours dependent on the pain killer. He told me it is easier for medication to keep pain controlled as opposed to be a 10 on the pain scale and expect painkillers to work effectively. I am prescribed Zomorph/Gabapentin/Amitrytline/Mefanemic Acid/Oramorph/Duloxetine
9 )Who gets you washed & dressed ? I spend 363 days a year in pjs and how often I change is up to the illness, if I am having a really bad week I can change once a week. On a relatively good week I can shower and change twice a week with help from my Hubby or Daughter
10 )What was your favourite thing to do before ME ? Drink and have fun with family & friends. Going into Liverpool shopping with my Daughter or for a meal with Hubby. Absolute fav was getting take out and sitting in our front room watching tv or a film with Hubby , Tink and Alfie.
11 )What is your favourite thing to do now ? Cuddle up in bed with the Hubby, Tink and Alfie. If I am in pain I need the bed to myself.
12 )What was the last text message you received ? Im just getting to Fazakerley. It was off the Hubby telling me he was on his way home.
13 )What is the best thing about you ? Forgiveness
14 )When you need help do you have help available ? Most of the time no. My Hubby still has to work full time and Becks is away at Uni so I do spend a lot of time in pain crying. The dog is so used to it he just licks the tears away and gives me a kiss, he will also nuzzle his nose into me so I cuddle him. We love cuddles.
15 )Who do you miss the most ? My family and friends. It has shocked me just how many people I no longer have in my life, shocked and absolutely heartbroken.
16 )What is your favourite sleep position ? Left side cuddled up or cuddling into the dog. People say dogs don’t like to cuddle , ours loves it 🥰
17 )Where sells the best pyjamas? Marks & Spencer for Quality and Next for choice. I do love Disney Store Pjs too and ones from Joules.
18 )What have you bought/been given that has helped your symptoms? I have lots but the thing that has been the best is my tens machine. We also have a Eve Mattress which is incredible and really does help relieve pain as it reduces the amount of pain on my joints.
19 )What is a good day? Being able to sit in our front room to watch tv or get out in the wheelchair to take the dog out with the Hubby.
20 )What is a bad day? Being stuck in one position as it hurts less than any other and staying like that until the pain subsides which could be 10 hours or more.
21 )If you had 3 wishes what would they be? 1) A cure for Corona 2) All country borders to be demolished and people to live where the choose to live not just stay in a place as it was where your family lived. 3) No money worries for everyone
22 )Are you happy? No
23 )What is your favourite book? Flowers in the attic by VC Andrews
24 )What is your favourite movie or tv show? Movie is Top Gun and TV Show Scrubs / Schitts Creek / How I met your mother / Game of Thrones / The Borgias
25 )Who is your favourite musician ? Phil Collins / Andrea Bocelli / Fleetwood Mac / Johnny Cash / Prince
26 )When you are having a really bad day what or who is guaranteed to make you smile ? My Daughter or Alfie , our black Labrador he senses a bad day somehow and he will then do all he can to make me feel better 🐕🦺
27 )What is your ultimate dream? To move away from the UK and start life over. I would love to move just outside of Rome to a house with a pool, Alfie and I would be able to use the pool each day to assist with the strengthening of my muscles.
28 )Do you have another diagnosed medical condition? Yes 😢 I have Endometriosis and De Quervains Syndrome in both hands plus an as yet undiagnosed liver / stomach problem
29 )What is the most important thing in your life now? Doing what I can to make a real difference to the lives of others with ME. I have big plans, I just want to have enough strength to put them into action.
30 )What advice would you give to someone who has just been diagnosed? Listen to your body, if you feel tired rest and never try to push through the pain as your body will punish you for it. Don’t be afraid to reach out for support, as we have all been where you are and we know exactly how you feel.
So that’s my All about ME. You are under no pressure to answer every question, this is all just a bit of fun and a way of each of us getting to know the person behind the illness .
I truly hope that this is a real start in bringing our community together by getting to know a little about you and not just about your ME symptoms or severity.
Love to you Alisha 🥰